An old friend of mine has just passed away. He was suffering from "Progressive Supranuclear Palsy". Apparently it can afflict 6 in every 100,000 of the population. He was finally given this diagnosis a couple of years ago, after suffering from symptoms which could have been Parkinson's, but which worsened to the point that he had to be admitted to a nursing home. He would have been in his mid seventies when he died.


When we met, 40 years ago, in Hong Kong, he was a very athletic chap, a wonderful cricketer. For many years he was a keen HASH runner. He loved his rugby, and it was actually he who suggested that I might be interested in Planet Rugby.



For the last year or more he was flat on his back in a nursing home. He gradually lost the ability to speak, to move his eyes, finally he could not even open his mouth. He did not want to be force fed. Fortunately the end came quickly.



He had four children by his first wife, she passed away a long time ago. He married again, and had a daughter. His second wife and daughter made every effort to look after him at home, but he was a big fella, and it just got too much for them to look after his needs at home.


He did see England win the Cricket World Cup, which gave him a lot of pleasure. He had been a very enthusiastic support of UKIP for a very long time, another cause for a modicum of joy at the end of his life.


From this description there might be a poster or two who recognise something of his story. Not sure how to engineer a contact, but I would be very happy to answer questions.

Rule 1 the widow & daughter if over 18

What's his name?

Sounds horrendous. In his situation I would've wanted to be euthanised long before the point where I couldn't even move my eyes.

Don’t ever change.

I take issue with your def of quickly

FFS Anon

Poor bastard. That’s probably one of the worst ways to go for someone fit and active.

Edgy, Anon, very edgy.

I was being serious

This disease killed my dad... Wouldn't wish it on my worst enemy - it was a relief when he finally passed

Same disease that killed Dudley Moore as well

Funnily enough, I had a vid feed on facebook re the most gruesome deaths. Back in antiquity there are several records of some dude who accidentally speared and killed his own king in a battle. So the troops put him in a boy length basked, heavily bound with just his arms, legs and face outside of it then smeared those parts in honey. Apart from the bugs chewing on him he got dysentry which was a perfect breeding ground for more bugs that eventually ate him from the inside. 17 days apparently.

Huntington's killed my father

Sympathies about UKIP

Luxury

Sandstorm you utter, utter, utter etc

I had a former work friend die of ALS (Motor Neuron). What was weird is that I spoke to him in early 2017 and he didn't even appear to know he had it, and he was dead by xmas of the same year. I never even found out until a year later. I thought that disease took years to kill you?

Was gutted, he was such a great guy.

just go to 4chan and u will find 100 more horrendous ways to die than those listed here..

Eh whats edgy about that? Over a year bedridden can hardly be described as quickly??

Actually, do

So you’ve got somebody you can feel superior about?

Fatal Familial Insomnia sounds like the worst way to go for me.

If anyone has seen the TV show Vikings there is a scene of insane horror about a technique so extreme that no one is fully sure if it really happened or not: the ritual execution of blood eagle, in which victims were kept alive while their backs were sliced open so that their ribs, lungs, and intestines could be pulled out into the shape of bloody wings.

Scene is here if anyone wants to ruin their Saturday night: https://www.youtube.com/watch?v=Ug6Gez_kPHo

You'd be dead from shock and blood loss long before they removed enough muscle tissue to get to you intestines.

Meh, just a standard night at torture garden

In some, the symptoms mask as other things and it can go undiagnosed for some time. A friends mother started having trouble with losing her voice. Other symptoms appeared over time until she was properly diagnosed with ALS 18 months later and sadly dead 4 months after that.

Is that when one’s snores so badly one cannot catch a wink?

Spend a lot of time there?

I run a charity for a disorder that locks people in.

1 in 10 000

The oldest woman I know is 76 and she’s never been able to communicate her intent. Until recent with eye gaze devices.

Even worse it was believed they never developed mentally, that has been proven false recently. Some people have been treated like children for decades.

One of the woman’s first words we please turn that f**king cartoon off. 10 years of little mermaid because they thought it was her favourite movie.

Dying with it is hard, living with it is a lot harder.

Reminds me of the way that people afflicted with cerebral palsy were treated many years ago, before the more enlightened (and effective) therapies were developed.



I belonged to a church youth group. We had two members who were cerebral palsy sufferers. One of them was a lad, the other was a young girl. He was definitely intelllectually disabled. She made strenuous efforts to communicate, but we all assumed that she was also intellectually disabled. I think everybody made that assumption about cerebral palsy sufferers.


One day she came to our meeting in her wheel chair, with a typewriter in the tray. She was now able to communicate with us, and, to our undying shame, she was actually very bright.